Writing. There are a number of reasons to keep a journal or to write stuff down. In the beginning, it was simply to remember what or when something happened. In my case, it really helps me process complicated feelings and to remember what I/we went through. When I stopped writing regularly I found myself being in a crappy mood every once in a while. I probably was thinking to myself too much. I needed this virtual audience to bounce thoughts off of, but because I wasn’t taking care of Kathy anymore it didn’t seem very interesting.
I hate to complain… Lately, I notice myself bringing up the early period of Kathy’s Huntington’s Disease. The angry years: the ten years or so (1996 – 2006) before she was diagnosed. These were the years before we could even talk about Huntington’s at all. We were on egg shells. I was on medication. But Kathy wasn’t. There were angry outbursts that many HD families have to deal with. So, in addition to the ongoing grieving process and missing the wonderful parts of Kathy, the first thing out of my mouth was a complaint about those years I lost.
I wrote about it a few years ago in this post called “Once you’ve seen one person with Huntington’s Disease, you’ve seen one person with Huntington’s disease.” That post probably describes it better. I’m not angry that she left me alone. Or that I had to take care of her. I would do that again in a heartbeat. I could feel the love from her even though she could no longer speak. And the last ten years of her life were full of love and gratitude.
Support groups. I’m still going to the two caregiver support groups: the Huntington’s Disease Caregivers group at UConn and a Dementia Caregivers group that meets at the library. I don’t really have to go but If there is nothing else going on I always go. At least that is what I tell myself. My caregiving for Kathy days are over but I’m still caregiving myself. I get a lot of strength from the other people there. No one is going through the same thing but there is enough in common that we feel a bond. This issue of anger and distrust is one of those common threads. They mentioned at the HD group that until now I haven’t given myself permission to be angry. Probably true.
Greg and Jenny. The other morning I had coffee at the Dunkin Donuts in Hampden with Greg from Mercy Hospice. He is the chaplain there and wanted to see how I was doing. He brought along the new social worker, Jenny. I got filled in on staff changes at the hospice. I guess Sam, the social worker that had been so helpful to us left back in November and Jenny was taking over. I filled them in about my ups and downs. Greg suggested that I go to the grief support group run by the hospice. He was saying that grief counselors have specialized training that “We don’t have.” He glanced at Jenny and said, “Sorry, that I don’t have.” I told them I would call them. Seems like a good idea.
We talked about other stuff related to Kathy’s case. I filled Jenny in about the body donation fiasco that happened. I figured since she was taking over for Sam she would have clients that needed to know that sometimes you need a plan B. Greg told me again about Casper Cremations in Boston that would have been able to handle the brain donation to Harvard and returning her ashes for a fraction of what it cost. And since Kathy was receiving MassHealth (Medicaid) would have reimbursed most of it. I try to remind myself that one of these days UPS or the mailman will leave Kathy’s remains out on the porch. I said, “I need to be ready for that.” Greg said, “It could be soon.” He said the med school semester is over. I need to call them, I guess. On the way out, I gave him a lot of supplies that were still left over from Kathy. I am going to have a yard sale but I’d rather donate it to the hospice if they can use it.
General health. Otherwise, I’m doing pretty well. I went to my regular doctor for a six-month visit and everything was fine. My weight is the same so I need to get taller, or lose weight. It is time for my annual prostate exam. And he wants me to get a colonoscopy. Don’t worry I won’t post photos on Instagram.
Urology. My previous urologist, Dr. Chadbourne has moved out of the area, so I knew I had to find a different one. And I didn’t want to use the doc that had taken over his practice. That doctor had been Kathy’s urologist for a brief period several years ago. He moved away too. The problem was he left right after he had installed a stent in one of Kathy’s kidneys at Mercy Hospital. Literally. He did the procedure. He came out to the surgery waiting room. He told me everything went fine. And said he was leaving town and the office would follow-up. And he was gone. I had no idea what happened. Had he been kicked out of the practice? Was he run out-of-town? Did Kathy pee on him in her sleep? I had no interest in finding out.
I made an appointment for myself with the urologist that took over Kathy’s care that time. He impressed me because he said he would have never put Kathy through that procedure. “She has enough going on, already.” She had already been diagnosed with Huntington’s. And they were monitoring her somewhat enlarged kidney. And her blood pressure was under control with medication. The stent didn’t really help with her blood pressure, anyway. He was a “Less is more” doc. I’m guessing that all of this happened in 2008 or 2009 before I started this blog.
Poor prep. I could have gone back to the same gastroenterologist for a colonoscopy but I decided to go to a new one in the same building as my doc in East Longmeadow. I won’t go into all of the details, but I went in for three attempted colonoscopies in a row about six or seven years ago. Let’s just say they called it “poor prep.” So I never really got examined back them.
The new office called around 8 am on Friday morning. I had gotten to bed after midnight because of an open mic I went to. The office said they had lots of appointments.
They asked me if I wanted to come in that afternoon.
Without thinking, I said,
“No, I don’t think I can get my shit together by then.”
At least the receptionist and I had a good chuckle about it. That appointment is this coming week.